Truebit: The Potential and Challenges of Public Health Data

Author: Truebit

Compiled by: ChainCatcher

Discussing public health data issues related to the potential of Truebit is Dr. Steven Teutsch, MD, MPH. Teutsch is a part-time professor at the Fielding School of Public Health at UCLA and a senior researcher at the Leonard D. Schaeffer Center for Health Policy and Economics at USC. He has over 40 years of experience in public health. Teutsch has published more than 200 articles and eight books on topics including technology assessment, health services research, and surveillance. The aptly named CDC Steven M. Teutsch Prevention Effectiveness Fellowship provides economists, policy analysts, and decision scientists with opportunities to apply quantitative methods to health protection and promotion as well as disease prevention science. Teutsch is a leading figure in the field of public health surveillance, and we are pleased to have him contribute to our writing.

Obtaining accurate public health data means the difference between a healthy, well-functioning society that can respond to increasing threats and a society that suffers from shortened lives and near extinction due to inaction and mismanagement. Truebit can provide more timely, complete, and accurate information solutions through decentralized stakeholders for data validation and management, performing functions currently handled by many typically independent agencies. This trustless system has the potential to improve the current complex processes used not only for interpreting data but also for communicating with the appropriate channels to ensure timely and effective action.

Public health is closely related to our lives every day. Safe food and water, control of infectious diseases, sanitation and environmental protection, oversight of healthcare systems, maternal and child health, drug regulation, and more. To work effectively, it requires accurate, timely, and meaningful data.

The COVID pandemic illustrated the importance of data. Consider all the ways data is needed and the sources of that data:

Information is often needed regarding race, socioeconomic status, gender, age, and detailed geographic information.

For public health agencies to take action, this information needs to be rapidly available at every jurisdictional level. Constitutionally, health is the responsibility of the states, and each state operates largely independently, leaving a complex network of data systems with too many data sources. Even basic information like case counts requires information from doctors and clinics, laboratories, and hospitals, each with its own data systems. Cases can be either provisional or confirmed (e.g., laboratory-confirmed). For example, public health often requires identifiable patient data to follow up on cases, thus not being bound by the privacy provisions of the Health Insurance Portability and Accountability Act (HIPAA). Nevertheless, it is important to respect the confidentiality of patient information and maintain the trust of clinical care systems, which requires compliance with HIPAA requirements as well as public health reporting requirements. The willingness or ability of these providers to submit data varies widely, and data loss is common.

Public health departments have developed various mechanisms to address underreporting and bias in data flows, as well as methods to reduce duplication and correct records. However, all these efforts are hampered by long-standing funding shortages and staffing shortages in public health agencies. Delays are common, leading to unnecessarily slow responses. In the COVID pandemic, early efforts to trace cases and contain spread were doomed to fail, replaced by more widespread testing and containment efforts.

Technologies like Truebit can effectively leverage the strengths of decentralized data flows and decentralized stakeholders to perform many data management and analysis tasks currently handled in poorly connected government agencies. In addition to improving current processes, stakeholders can find innovative solutions to enhance analysis as well as interpret and communicate results.

Public health surveillance (the continuous, systematic collection, analysis, and interpretation of health-related data essential to the planning, implementation, and evaluation of public health practices) is a core function of public health. Improving systems to respond to changing needs, ensuring the timeliness and accuracy of data, analyzing and interpreting data, providing it to those who need to take action, and monitoring the actions taken and their effectiveness can greatly enhance the performance of public health systems. Truebit has the potential to bridge the gap between inefficient data reporting and timely public health action.